However, these data sources do not collect data on race and ethnicity in standardized ways, and they contain little information on other relevant patient characteristics. Finally, although much information on health and health care comes from private data systems maintained by health insurance plans, hospitals, and medical groups, data on race and ethnicity usually are not collected in these record systems. When the information is available, it is often unstandardized and contains little information on patients’ socioeconomic characteristics or acculturation and language use. The lack of standardized and complete data challenges the establishment of reliable baseline and trend analyses of health, health care access, cost, and quality by patient characteristics.

Concerns about the adequacy of the current infrastructure to provide the necessary data to understand and eliminate racial and ethnic disparities prompted Congress to direct the Department of Health and Human Services (DHHS) to request that the National Academies conduct a comprehensive study of DHHS data collection systems (P.L. 106-525, 2000). In response to this request, the DHHS Office of the Assistant Secretary for Planning and Evaluation (ASPE), on behalf of a number of agencies within DHHS, asked the Committee on National Statistics (CNSTAT) of the National Academies to convene a panel of experts to review DHHS data systems.1 ASPE and CNSTAT developed the charge for the study based on this legislation and on the department’s own needs for review of its data systems, giving the panel the flexibility to review related data needs as they arose.

The panel was charged to review data collection or reporting systems required under the department’s programs or activities relating to the collection of data on race, ethnicity, and socioeconomic position. The charge included examining data collection systems in other federal agencies with which the department interacts to collect relevant data on race and ethnicity (such as that of the Social Security Administration [SSA]), as well as systems of the private health care sector. The panel was asked: (1) to identify the data needed to support efforts to evaluate the effects of socioeconomic position, race, and ethnicity on access to health care and on disparities in health as well as to enforce existing protections for equal access to heath care; (2) to assess the effectiveness of the data systems and collection practices of DHHS and of selected systems and practices of other federal, state, and local agencies and the private sector in collecting and analyzing such


Other DHHS agency sponsors include the Agency for Healthcare Research and Quality (AHRQ), Centers for Disease Control and Prevention (CDC), Health Resources and Services Administration (HRSA), HIV/AIDS Contingency Fund, National Institutes of Health (NIH), Office for Civil Rights (OCR), and Office of Minority Health (OMH).

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